All of us know them; a few of us have lived with an undiagnosed adult with Autism Spectrum Disorder, or ASD. Why is this? The seminal work on Asperger’s (in the U.S., this is now “ASD”, but for the purpose of this blog I will use “Asperger’s”) wasn’t available to the English-speaking world until Wing’s work in 1981 and Frith’s translations in 1991 (see links below). Asperger’s is not new, not even as new as the translations. So, undiagnosed persons have been around for a long, long time. We hear a lot about those who have accomplished much and may have had AS–Lincoln, Einstein, Bell, Dickenson– what about ordinary citizens who live with it?
Not all Aspies are able to turn their restricted interests and passions into lucrative, or even successful, careers. Many end up living alone, going from job to job or unable to work, or living with relatives and never achieving adult relationships. But, some do. I am writing this post regarding a few informal tips I have developed on how to live with an undiagnosed adult. I have done that.
Tony Attwood is a source I turn to again and again in this arena. Here’s a quote:
“With Asperger’s, life is a stage,” Attwood said. “The curtain goes up while they are in public and down when they are at home. Because other people do not see the problem, they question your sanity–you are on your own. In some families, denial has held the family together for generations, and you want to bring down the scaffolding.”
As a result, the neurotypical partner may actually need more support than the one with Asperger’s. Therefore, contact with other partners through newsletters, a support group, or an Internet site is vital. “You cannot get this knowledge from professionals,” Attwood said. He also recommended having an independent social life and an occasional vacation apart.” — http://faaas.org/2011/02/adults-with-aspergers-syndrome-often-go-undiagnosed/
The first paragraph, above, deals with the isolation which may be present if you have a partner, parent, or sibling on the spectrum. Since we are talking about those who are undiagnosed, the chasm within and without the family may be particularly wide. Persons with AS are on-stage when they are with others, and may have over their lifetimes created separate, successful personas depending on the individual they are dealing with. Various children may, in other words, see a different dad, because he is different with each child. When it comes to caring for an aging parent on the Spectrum, and some live close and some live far, this can create all sorts of disorder; hurt feelings, arguments, disbelief, and inefficient or ineffective planning. With all good intentions for the loved one.
Let’s backtrack a bit. What might you see with the undiagnosed adult? Keep in mind, the latest numbers of diagnosed in the U.S. population are 1 in 68. So, you most likely know several people who are diagnosed. But, it is also true you probably know several who are un. It’s not our place to diagnose–even if we are medical professionals capable of doing so–those we are close to. So if you can’t diagnose, how can you cope? I am trying to offer a few practical tools for living with a loved one on the spectrum. I am talking about tips on how to help yourself. There are many volumes written on how to support the loved one on the Spectrum. What about you? First of all, what is an adult with AS like? There’s a saying, if you’ve met one person on the Spectrum, you’ve met one person on the Spectrum. However, there are some things you can do to make your own life with your loved one easier.
Although this is from an entirely non-academic site, the following jumped out at me. I will follow it with more thorough links. The below is one of TEN possible identifiers of undiagnosed adults:
Need for Routine
For autistic individuals of any age, there are a lot of unknowns in the world. Many social and communication skills others take for granted are mysterious to those on the spectrum. One way to provide comfort and predictability is to rely on routines.
In autistic adults, this need for routine can take many forms:
- Dislike of travel
- Refusal to try new foods or restaurants
- Following the same schedule every day
- Feeling great discomfort when you need to deviate from your routine
- Difficulty changing plans
- Following the same route to get from one place to another
Other identifiers from the same site, which you can research on your own if you’d like, are:
- Few friendships and relationships
- Non-verbal communication challenges
- Sensory processing disorder
- Lack of empathy and shared perspective
- Verbal communication problems
- Preoccupation with certain topics
- Repetitive and stereotyped behaviors
- Savant skills
- Sleep problems with anxiety
Note that the quote above, regarding routines, says can take many forms, then gives examples. If the person you love doesn’t exhibit all of the above–for example, if they are a great sleeper and have no anxiety–it doesn’t mean they aren’t on the Spectrum. Think about the person you love whom you believe to be on the Spectrum. How are they with routines, and what forms do those routines take? After all, we all have them. Routines for how we brush our teeth, routines for how we spend holidays, how we interact with favorite friends or aunts and uncles. But, for your loved one on the Spectrum, adherence to routines might seem hard to understand. Perhaps eating out at four p.m. every Tuesday with a particular friend supersedes even emergencies. Maybe, even on your birthday they can’t consider going to your favorite restaurant because there is nothing they think they can eat, there. These tenacious adherence to routines may serve the purpose of self-regulation, but they also involve other issues with ASD, including lack of shared perspective.
In my experience, it is very difficult for the adult who is undiagnosed (and for one who is) to flex on the regular routines they depend on unless, somehow, they are affected; for instance, if they are too ill to go to a planned meeting. It is also difficult to understand, or to compromise on, another’s need to vary the routine or to change a part of it. One caution I would give is, if you need to miss a planned date, or you as another individual in the family cannot stick to the routine, gently but firmly let the individual know that you will be meeting your own needs, even if they feel they need you there as a possible transitional item or as part of the routine.
What do I mean by transitional item? I hesitate to use the term “transitional object” when it comes to people. But, I have found that adults on the spectrum depend on loved ones to act in a role of familiar item, or safe person if you will, particularly when there are variables involving other people in the routine. Let’s say the routine is a weekly bingo game. While your undiagnosed adult may have been attending the bingo game, with or without you, in the same place and time every week, perhaps a very familiar friend and regular at the game has lately been bringing a guest who is a stranger. The undiagnosed adult may, what seems to be, unreasonably insistent on your presence. They may be very uncomfortable by the addition of a new individual to the group, and not appear to care or understand that is the day of your granddaughter’s recital. Their needs are understood to be more important than yours; it is difficult if not impossible for them not to be at the center of activity. This speaks to impairment in theory of mind and in empathy.
I would suggest that you employ the “broken record” behavioral technique after explaining the situation. Let them know gently and firmly that you hope they have a good time at the bingo game and that you will not be attending. Stick to your explanation and boundary and repeat as necessary. Try to understand that the likely ensuing meltdown is due to disregulation and is not your fault. This is an extension of Atwood’s suggestion, above, of separate vacations. It is vital in maintaining the relationship, and your own sanity, that you set boundaries you can live with. Take time for yourself, and limit your activities with the individual involved to ones you both enjoy and gain something from. Some chores are necessary–work, dentist, doctor, car servicing, paying the bills, etc–try to get those done in a way where each is informed and takes some ownership. However, elective activities (and these routines should be kept as choices for you, even if the undiagnosed individual doesn’t seem to have a choice about them) need to remain so in order to maintain healthy boundaries within the relationship.
Individuals on the Spectrum often have difficulty understanding social boundaries. If they ask you questions which are too private, say so. Say, “I’m sorry, that’s private.” Even spouses are entitled to privacy; so are parents and children. This is difficult for a person on the Spectrum to grasp. They may ask questions about a confidential job, your pay or your bills, or any number of things which aren’t their business. Be prepared for backlash when you are boundary setting. Explain as you see fit. Also, if they behave in a way which embarrasses you when you are with others, take them quietly aside and let them know that is unacceptable–one example would be telling an anecdote about you at a gathering which paints you in an unflattering light. Let them know you will not participate with them again if they talk about you or tell your private information. Make it very clear that this intolerable behavior. Try explaining a couple of acceptable stories they can share. Be aware that repetitive behavior is part of ASD–this can include having scripts or retelling stories over and over in social situations. When a person you care about begins to repeat a story at a gathering, it might be a clue that they are feeling uncomfortable or disregulated. You can develop a private visual cue, if they would like that, to let them know they are behaving inappropriately or appear disregulated. Then they can consider if they would like to excuse themselves from the venue. Often privacy is a relaxing and regulating thing for people on the Spectrum–being with others, even with others they love, can be exhausting and hard work.
Other clues that your loved one might be disregulated in public are repetitive behaviors, such as tapping fingers or feet, rocking, nail biting, or clenching and unclenching fists; talking or laughing loudly; staring at the floor or table without looking at others; having a talking jag or talking over others. Turn taking in casual settings is particularly difficult for those on the Spectrum. Many won’t talk at all unless directly addressed because of this, or respond with monosyllabic replies, or they talk over others. Some have very limited ability to respect the right of others to speak, or have a mental hierarchy which involves themselves as the most important person at any gathering, and–as an example–the friend’s friend at the bingo game as an interloper who should not be given a chance to speak. Others will focus exclusively on the stranger at the table in an (often awkward or uncomfortable) attempt to draw them out. This can include intimate or inappropriate questions, like, “how old are you”, “how much money do you make”, “what kind of grades are you making”, etc. The best way, in my experience, to address these social issues is privately.
One caution is, arguing with a person on Spectrum can be worse than arguing with a neurotypical. People with AS are usually rule-bound; they follow rules, but they also often make them up and certainly expect you to follow their rules for you. While mutual respect is crucial to any relationship, make sure your loved one understands that you are an independent, capable adult who deserves respect. This include discussion of disagreements, privacy, and being entitled to your own thoughts, opinions, and activities. You have the right to not engage if the other person is abusive or disrespectful. Remember that. Respect and understanding are key. It is also critically important, as Atwood states above, to seek input from others in your same situation. While professional consultation and counseling have their place, there is no substitute for the support group. Find one.
Here are some helpful links, and feel free to contact me with feedback.